Before I was a caregiver, I used to think caregivers did things like feeding, dressing, or toileting their person. I never considered the role outside of individual tasks; I pictured a caregiver’s day punctuated with things to do, which, by the way, is true, but it is only part of the story.
My husband has secondary progressive Multiple Sclerosis (MS), after years of having relapse-remitting MS. He was diagnosed at 21, began medications at 29 for his relapses, and met me later that year. When we met and married, he was walking, biking, and coaching soccer ... all with very little indication of what was to come. His relapses would land him in bed or in the hospital occasionally, but in our 30s, MS was mostly a side note and consideration.
At 40, we began looking for a ranch-style bungalow to renovate because his relapses were more frequent and our back-split, four-story home had too many stairs. We moved to a ranch style bungalow and started renovating in May 2012, and by October of the same year, he was using a wheelchair full time. It seems fast, as I write, but our lives played out as most lives do—with highs and lows, celebrations, and sorrows, and some good and some bad days. Even as my husband began using a wheelchair full time, and we renovated our home to include ramps and roll-in showers, it didn’t yet feel overwhelming. His wheelchair helped him to feel less fatigue than walking, which meant he had new energy to travel and enjoy the day-to-day life of being a father and a husband.
Our 40s was when MS hit hard. There were more and longer hospital visits. Little by little he lost function in his hands and legs and lost the ability to drive. Personal Support Workers (PSWs) were scheduled to come daily to alleviate some of the work of getting Bob up and ready for his day. He wore out his rotator cuff and lost core body strength, resulting in moving from a manual to a power wheelchair. This necessitated a change in vehicle, more renovations to the house to make doorways wider, and then new flooring because wider doorways leave holes in the floor. He could no longer transfer on his own, which resulted in the purchase lifts to move him from bed to wheelchair and made it impossible for me to go to the office. Travel became challenging—either with a wheelchair van piled full of medical equipment and luggage or flying and hoping nothing got ruined and the airline remembered to charge their patient lifts.
Now in our early 50s, MS has gone from being a side note of our story to being the plot. And while my early belief of caregiving being centered around tasks was not wrong, I realize now that I had not previously understood the emotional labour of being a caregiver. I don’t do a task and then go back to my life … the tasks are my life, and my life is both punctuated and interrupted by these tasks. The PSWs come or they do not come, which is my worry each day. II wonder whether the driveway shoveled and plowed, the door is unlocked, the dogs are away, and my husband’s clothes out? If the driveway or door or dogs are not ready, the PSW may leave. If my husband’s clothes aren’t out, the PSW will pick them, and my husband will look like an orphaned geriatric in a long-term care facility with pants on backwards or hiked to his nipples with an unmatched sweater askew. I’m the one who stands there and ensures that his clothes are put on properly and sitting well, that his hair is brushed, and that he looks 52, not 92, when he goes out.
I stand and listen to the complaining about his compression socks and how hard they are to don, because I know that if I don’t, they won’t go on and his legs will swell. On days I go to the office, I pray the whole drive there that his PSW shows up, because a few times they haven’t shown up and then replacements are busy. Yet when you complain, they tell you that he’s your responsibility and you shouldn’t have left until someone got there, even though you’re still working and being home 24/7 due to their unreliability isn’t feasible. When I work from home, I’m interrupted to do tasks such as reaching his food and drinks, helping him out the door, or toileting him. I take time off to work to drive him to medical appointments and to coordinate his care.
I make all the meals, and we plan our vacations around his disability. I call the restaurant to ensure that they are wheelchair accessible and that they understand what that actually means before I drive all the way there only to discover steps. When I go out without my husband, I stay local or ensure that there is adequate back-up care in case he falls or needs something. When he’s in the hospital, I work from his hospital room and only go home to take care of our dogs and to sleep. When I want to go away for respite, I must make sure someone is here with him, and that he’s having as much fun as I am. Otherwise, I feel guilty removing myself from our current situation, even for a few days.
My husband and I also no longer sleep in the same bed. Caregivers don’t talk about this, and it expedites a spousal relationship to a caregiving one. As my husband moved into a hospital bed and acquired a lift and had other issues, I had to change rooms. It means I go to bed and wake up without him - and somehow that weighs on me, too.
People suggest that I get more help. I looked into that, but caregivers have to pay for help with three-hour minimums. The government doesn’t, but we do. And our medical benefits only pay for nurses, but nurses don’t do personal care. This means that as a caregiver, I’m also a calculator … endlessly checking our finances to see what makes the most fiscal sense, as we think about a future that dangles on the horizon. Do I spend $120/day for three hours of PSW care, knowing I only need 45 minutes of those three hours, and knowing that the PSWs themselves are only seeing about half of that? Does that make sense if we will need to get around-the-clock care at some point? When is that point?
In our 50s, we already talk about end-of-life care, around-the-clock care, and the possibility of not being at home. We try not to feel old, or weary, or scared, as we have conversations that people our age don’t always have. We are both incredibly aware of, and intentionally ignore, our compressed timeline.
So, What Do Caregivers Need?
What we actually need is a system that doesn’t work against us and operates with the client in mind as opposed to being focused on revenue.
However, we’d be happy with friends who invite us to coffee or on walks. Friends who won’t judge us for loving our spouses and hating the system and this disease for making everything more difficult than it needs to be.
We need to not be ignored while you’re trumpeting about what a hero our spouse is, when it was us who got them up or coordinated their care and who didn't sleep due to the worry or hurt themselves trying to sit them up better in their wheelchair.
We also want you to know that grief is not something that happens once our partner passes. It happens every day, in segments. I’ve already grieved my husband walking beside me, sharing a bed, travelling freely, and a thousand other minute conveniences that have disappeared slowly. I have experienced anticipatory grief, knowing what will come one day. And while we can and do experience joy, grief shows up unexpectedly … like watching older couples walk together while holding hands and realizing that will never be you. Our hearts break not for ourselves, but for the life our partners will either miss or miss out on, and the myriad other inconveniences we need to endure to give them the life they deserve.
HHA's next virtual Caregivers Death Café is Wednesday, October 18th @ 7:00PM. You can register to attend here.
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Christine Smith is an HHA Death Doula Candidate. You can learn more about her at instagram.com/thoughtful_death_doula.
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